Next Chapter


Ready or not, here I come…

Well I have tried to postpone this time for as long as I could but the time has now come. I had a scan last Friday (after fighting with my insurance once again!). I wasn’t really concerned about the results of the Y90 procedure, I was more interested in finding out how “the rest” was doing. I knew I had stopped responding to the maintenance chemo from the progression in my liver. Now the question was whether there was progression on the lungs and also were there any new spots elsewhere. I guess I was prepared for the worst as it seems like lately things have been going downhill. I met with my doctor on Monday. He is pleased with the results on my liver so far but he had to break the news to me that there was progression in the lungs too. Again not too surprised but nonetheless very bummed. As I mentioned before, I am out of “big guns” chemo options and I have one chemo left, a new agent that was recently FDA approved. However, I have not been impressed with the results I have seen so far with this new chemo. Some people seem to do well on it but from what I am observing, many people have a short period of stability before the cancer starts progressing again. If we had not seen progression in the lungs, I would have been comfortable trying the chemo pills but when I found out that there was progression outside of the liver, I knew I needed to do something more aggressive. I have been looking at trials for a while, following other fighters’ response to different trials, researching my options, and sending my findings to my Shands doctor for his input. So far, everything I have discussed with him was not the right fit for me. I have been quite excited about a certain trial and he seemed to think that it would be a good option for me but they closed the Phase 1 part of this trial a couple of weeks ago. A Phase 2 trial should be starting soon – but how soon? the time is ticking and I need to do something now. I think it is wise to get into a trial while we are still “healthy” enough. Believe it or not, there are many exclusion criteria to enter a clinical trial and basically you need to be healthy enough. My Shands oncologist suggested a trial called “NHS-IL12 for solid tumors”. This is an immunotherapy trial at the National Cancer Institute (NCI) in Bethesda, MD. I know my oncologist has been keeping his eyes open for me. Although I didn’t have the chance to talk to him about the study, I know that he must have had a good rationale for it. I trust his judgement 1000%! This study is to evaluate the NHS-IL12 agent’s capacity to help the immune system become more active and kill cancer cells that have not responded to standard treatments. A key factor in choosing this trial is that it will not preclude me from other immunotherapy trials if I don’t respond to this agent. In one of his messages, my oncologist mentioned that early results have been promising. They have seen shrinkage of tumors (not just stability) but their sample was small. I actually like the idea of having a foot into the NCI system. There are many trials underway and in the works so if I don’t respond to this one, I believe that they will be able to help me find another trial and already being in the system may help speed things up.

There are obviously pros and cons of being in a trial. In a Phase 1 study (which I am about to enter), researchers are interested in the safety/toxicity of the drug. The goals of a phase 1 study are to find the highest dose of the drug that can be given safely without serious side effects, to understand the effects of the drug on the human body and to find the best/safest administration techniques. In a Phase 1 study, the researchers are not so much interested in the efficacy as they are in the safety of the drug. In my mind, when you are enrolled in a Phase 1 you truly are a lab rat… On the other hand, while enrolling in a Phase 1 trial, you will receive the specific drug, there is no control group receiving a placebo or the “standard of care chemo”. I know I will be monitored like a hawk and that in itself is reassuring. I have had so many issues with our medical insurance that I am feeling relieved to know that my next treatment and scans will be covered by the trial – no need to fight with the bozo doctors at eviCore, the company that Cigna hires to determine if the procedures are “medically necessary”. I am not trying to fool myself, I know more people fail trials than people who achieve remission but again, there are miracle cases and many cases where people at least benefit from a time of stability on drugs that are typically not as as harsh as the regular chemos… So the plan is to fly up to DC next week where I will get blood work, scans, and will meet with the principal investigator. If everything checks out, I will most likely return the next week for the first dose.

A whole new world to navigate ahead of me…


5 thoughts on “Next Chapter

  1. Oh Sweetie, I’m so excited for you! Reading this, I got a very strong, positive vibe. No, I’m not psychic (maybe psycho…) just feeling that this may be your silver bullet. Man, I hope so!! And thanks for being a lab rat for the rest of us. Cutest rat I know!

  2. Wishing you well next week in your travels and hope that all checks out for you so you can begin this trial. Sending love and hugs to you.

  3. Wishing the very best for you! I consider NIH (NCI) my “second home”. You will be very well cared for there!!!

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